Tag Archives: Ranting

Is This Really My Life?


Life can seem seriously warped and ridiculous when you have a chronic illness, like lupus.  I often feel like I’m swimming against the current, trying to make it to … wherever.

Most people go through their day doing whatever they do because it’s just a regular day.  I remember what that was like.  I haven’t had a “regular day” in years.  Lately, I dread waking up in the morning because I never know if the day is going to be physically and mentally challenging.  Usually it’s both but there’s always that chance it won’t be either.

I’m not talking about life as a rocket scientist.   I’m referring to the basic stuff, such as a quick stop to the grocery store because I can’t be over-exposed to fluorescent light.  Or accomplishing the difficult tasks at work in the morning before the headache, vertigo and eye strain starts slowing me down.  Or having a discussion while I’m in a lupus brain fog and trying to figure out why I said “apple” when I meant to say “telephone.”  This week my hips and ankles hurt like hell.  Last week, I had a low grade fever almost every day.  I’m not sure how many loads of laundry I can do tonight.  Why?  Because it’s painful to walk up and down 3 flights of stairs every hour when you’re dizzy and carrying a basket of clothes.  I can’t manage to be optimistic and upbeat lately.  As I said, it’s hard to swim against the current.  So I get discouraged with all this ridiculousness and find myself thinking “Is this really my life?”

I’m hardly a senior citizen but I often feel like a disabled old lady.  I don’t actually look disabled and that’s half the problem.  There’s no sign around my neck that says “Watch Out – This Woman Has Lupus.” When I look in the mirror it’s hard to believe I’m looking at me.  Who is this woman with thin and brittle hair that’s constantly falling out?  Good thing she bought a wig.  Her skin is paper thin from taking steroids all these years.  She has hives on her face again.   And look at those bruises on her arm.  Who hit her?  Did she fall?  Too bad she’s gained weight because of the medicine she’s on.

Will I be strong enough to scrape the ice and snow off my car this winter?  Will the glare from snow on the ground trigger another photosensitive rash?  Will I have the strength to work 40 hours a week?  Will I be able to be a steadfast and reliable friend, sister, mother, to those who are important in my life?